Tuesday, May 17, 2011

I’ve been lying to you all

AS much as I preach that our lives are still normal,  I’ve come to realize how untrue that is. 

Having two girls, a husband, a toddler with down syndrome, going to dance recitals, brushing long hair, throwing a ball around with the little guy, dancing with the husband…. Spending time with family, spending time with our DOWN syndrome family, Ds events, therapies, doctors visits, extra concerns IS our NORM. Normal to us, yet not to those without a child with special needs. 

IF I was a mother to two typical girls and a typical son my life would indeed be different. Probably still a very good life.  But I would be oblivious to many many things. I would take for granted things that I now so passionately cherish. I wouldn’t necessarily be a bad person; I just wouldn’t be me, the Me I am today. 

This past weekend we went to watch our nephew’s baseball game. As we made our way through the crowds looking for the field he was playing on, we surprisingly ran into some of our Ds friends.  One family which was there with their daughter (Ds) who was playing on the local challenger team. 

We were rushing to get to the right field and only stopped for a few minutes and caught a glimpse of the game. And that was all I needed was an itty bitty corner of my eye view to be touched to tears. Granted a lot of friends have their children on challenger teams, we’ve never been to any of their games. Seeing this for the first time was moving. 

I felt this immense feeling inside, emotions inside that wanted to explode their way out of me. I wanted to cry and sob uncontrollably. But I didn’t. I kept it together…surprisingly. 

That’s MY world of special needs and disabilities. THOSE children on that field and their proud parents excitedly cheering on their kids. That is my world.

And I think to myself, if there was never an Ethan, or if Ethan didn’t have Ds… would I have felt the same…? I doubt it.  I would have rushed over to our nephew’s field, maybe taken a quick glance, thought to myself “aww how sweet..” and that’s it. Moved on with my life and never thinking twice about those children on that field. It wouldn’t be Tuesday and I would still be talking about THAT game. Never would I have shared the same emotions as those parents on those bleachers.  NEVER EVER would I know how special that game was to those children and their parents...   But I do know. 

Because my life is indeed different because I have son with Down syndrome. And thank God that I do. Thank God that I can stop and see what I would have never seen before and that I won’t take for granted some things that are a given to all, but only a few are able to take in. 

It felt so damn good to be part of those people, even if my Ethan wasn’t on that field. But we share an unspoken bond. Just another perk of being in the club.

No denying, when you enter the world of disabilities and special needs your life will be different, but I think you’ll see it will be a good type of different.


  1. Ahhh, great post! It is a good feeling, being a part of this club!

  2. Love it and proud to be a member of this very special and "elite" club as well.

  3. it's so true, isn't it? you say it perfectly, I would have noticed, thought how nice it was for those kids and their families, and left...and I wouldn't have mentioned it to anyone, not out of meannes, but because it wouldn't have been relevant...
    but last week I met a man with DS at the store who won a gold medal at the SO in swimming and I told everyone I knew! ha!
    great post!

  4. I know what you mean! I would not be 'me' either, and I am so grateful. I might have more time on my hands though...

  5. Sobbing cuz that was so beautifully put! And sooo true. I too am so happy and thankful to be in this oh so special club. God really knows what he is doing. :-)


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